Sleep

Hi. Im sorry to read about your mum. 

My husband was on oramorph for breathing too, and over time, he did need it more often. It helped him sleep a bit. Could you check with her care team how much/often sge can gave it, maybe before she goes to sleep might help?

Do you have any hospice support? They provided night carers occasionally so I could sleep in a bed( i was on the settee).

Other than that, I used to snatch some zzzz when he slept, much like you do when you have a baby! So rather than doing jobs if he slept, i slept too. 

Its exhausting though, physically and emotionally.

Hugs coming your way.

Hi! I'm also staying with my Mum who is terminal. I bought a headrest type of thing for under her pillows (I think it was actually for raising her legs - but needs must). That has helped as she was otherwise coughing a lot. At present I'm fortunate as she seems to sleep right through the night now (and large chunks of the day). 

Malengwa is right about seeking hospice support - they have offered me occasional night carers.

As for my own sleep, I'm finding that I listen to podcasts all night long ... drifting in and out of sleep. At first I was wracked with anxiety and fears so didn't sleep at all - now I find I've managed to exhaust myself so much during the day that I go straight to sleep. 

It's so hard though - sending you lots of thought and sympathy.

Thank you. I've managed to get her to take the oramorph before bed and once during the night which seems to be helping. Her sleeping still isn't good but at least her breathing is better.  I had a quick nap yesterday when the carer came round. I know I need to find a balance of living after her and looking after myself x 

I bought a  v pillow which we tried last night and she seemed more comfortable. I'm now able to get her to take the oramorph before bed and once during the night which seems to help.  I think I just need to give myself permission to sleep! I slept with white noise in one ear last night so I can still hear the bell. It wasn't a great night's sleep but it was better than the night before. Will speak to the care team today to see if I can get cover a couple of nights a week.  Hope you're doing ok. X 

Hiya! Giving yourself 'permission' is absolutely the most important thing, I feel. It's so hard though - sometimes you feel guilty and selfish. Good luck with the care team today re cover. I'm still going through the process of trying to get a care package together for Mum - even that is guilt-inducing but I'm self-employed and if I don't get some time to work back in my own home, my business will go kaput along with my sanity! I wouldn't wish these kind of dilemmas on anyone. x

It's so difficult. I live abroad and although my employer is very understanding I'm still dealing with the fact that if I don't work I don't get paid. Mum gets quite anxious at night and I know it helps just someone being here with her. No word yet on overnight carers.  She has a couple of friends who she can phone if things get bad when I'm not here, but one is going away in a couple of weeks. So I want to make sure I'm here then.  But it's the whole question of will she be ok for the 2 weeks I'd be back home.  Because I can't give up my job for a few months. 

Obviously - from the time you sent this message - you got little sleep last night too! Hope you fare better tonight.

And here’s me fretting about not being able to go home when it’s only an hour away - you’ve put things into perspective for me somewhat.

I’m glad you at least have an understanding employer and I hope you have managed to find some overnight carers by now. I know a lot of private agencies (not sure if I can name them here) provide the service - my friend used one for a short while and, although the charges were pretty eye-watering, it gave her the reassurances she needed. I would take advice from the local hospice if you can.

Poor Mum’s had a bad day today with aches and pains (I never know how she’s going to be from one day to the next). I’ve also spent a lot of time battling with stairlift quotes and the council’s financial assessments for her care - so now I’m about to start my own freelance work to try to keep my head above water. It’s never-ending! 

Sending you warm wishes.

During the day things are ok. Mum is very tired and sleeps a lot, but can mostly have little  conversations. But she has started sundowning. She gets so agitated and confused in the evening. Then tonight she had a toilet accident. Although she was very confused and " didn't know where the water had come from".  The nurses are thinking it's maybe time for her to go to the care ward ( it's a small cottage hospital so nice and peaceful). If they can't organise a bed then they're going to up our care package so we can have occasional night cover and a bedtime visit.

  My boss has told me to take all the time I need " everything else can wait" which is a huge relief. 

The ups and downs are the most exhausting thing. You can never get into a routine because something new always crops up.  Hope you're doing ok and managing some time for yourself to relax. Hugs 

Hi there! That's great news about your employer - phew! It must be so reassuring. You're so lucky - I can imagine not all employers are as flexible.

It's the first day of Mum's three-day-a-week care package today - we've so far had one visit which went well. But I've still not gone home yet because there are other things to do first - pick up prescriptions/collect parcels etc. I've realised I'm going to have to be far better organised if I'm going to enable this system to work for both of us.

Like your Mum, mine sleeps a lot but she's not suffering from any confusion or sundowning yet. I'm so grateful she knows how to use her iPad and can entertain herself with that - puzzling, reading, watching TV while she's in bed. I'm pinning hopes on the stairlift encouraging her to get downstairs and see friends but I worry that - in reality - she's got too accustomed to staying in bed all the time, which makes her weaker.

I do hope you've managed to make some progress re the care ward/upping the care package. As you say - the ups and downs are the worst. You don't know what you're waking up to each morning/what the mood will be like. 

Hugs to you too. When I next post on here, I might actually be in my own home for a night. It sounds selfish, I know, but the idea of some respite while knowing Mum is getting someone calling in to see her is SO appealing.  

I'm definitely getting into a better routine and saying yes to every bit of help offered. Marie curie phoned on Friday and said we're on the list for overnight cover. So hopefully that'll be soon! I'm so sorry for your loss. I really appreciate you sharing your experience with me. 

Hugs